Upcoming Trip to U of Michigan

[eyeamdry]

I have been to a bunch of "ologists" during the past 6 months because we went on vacation and I was incapacitated the whole time. I couldn't breathe and could not exert myself the least little bit.  I've gone to neuro/pulm/cardio/rheumy/gastro and god only knows who else.  I get "I can't find anything wrong with you" from all of them.  I guess I really believe them.  I do have sjogrens and fibro and copd, but no one can find a reason why I have to struggle to breathe.  I also have a spot on mid spine C-6 where I fell many years ago ice skating and crushed the spine nerve.  I was at my GP's and mentioned it.  He gave me 3 short in the spot but I don't feel any difference.

My GP's office got me into Ann Arbor in like 3 days.  I don't want to get my hopes up, because I went to Cleveland Clinic for a consult and all I got was a one hour appointment for $500.  U of Mich was where I was diagnosed with SJS after a local rheumy told me I did not have SJS and gave me some old arthritis pills and sent me on my way.  In less than two weeks, the docs at Rheumatology Dept  at U of M had me diagnosed with all the details, positive bloodwork included. 

[gurs]

Lucy, I hope you have a safe journey, and get some answers. Just remember, it only takes 1 doc to figure it out!!! maybe this will be it? If they cant figure it out, move on to the next place right? dont give up sweetie!

Keeping you in my thoughts...

Gursie

[eyeamdry]

Thanks Gurs,

I have 3 separate appointments on Monday.  I've had them all before, but they usually like their own tests and up to date.  i know I'll have a chest x-ray, a breathing test and see a doctor.  i know this will be an initial visit, but hope more will be set up.  My GP mentioned perhaps having a lung biopsy, which I am fine with.

[audreygu]

I read your story.Then read it aloud to my husband. It is my story exactly. Finally went to new pulmologist at Columbia Presbyterian in NYC. I have bronchiectasis, which was discovered on CAT of chest. Advair has improved things, but still SOB. Recent PFT showed diaphragm not functioning normally. Will see same pulmonologist for f/u. Also had been on Mucinex on and off over last yr.. I figured out that was causing my GI issues to flare.I was prescribed SSKI(potassium iodide) works well to thin mucous and no side effects.I wish you well. Its an ongoing saga with no end in site. Would like to hear follow up on your story as it plays out. Your post reassures me that I not alone. Thank you

[eyeamdry]

Audreygu, thank you for taking the time to post to me.  My breathing tests all turn out "ok".  That means I am near the normal line or just below and sometimes better than average.  I can't breathe no matter what it shows.  My
GP can tell just by talking to me.  I may not find out on my first trip to U of M, but do have faith in them.  They have been good for me diagnosing me with sjs after another rheumy said no.  I have also referred a few ppl from here over the years to try there if they are near.  I've always heard good stuff back.

Your diaphragm not functioning normally!!!!!!  That sounds like something I have but not sure how you find out or fix it.  I've had radiation to my left lung for breast cancer and rads change your body.  My collar bone aches really bad.  Also have a back problem which makes a numb spot around my torso.  Sorry for rambling.  I will keep this posted.  We will go to Ann Arbor 200 mi round trip on Monday.  Don't have to be there until 1 pm.  Will be late getting home.  Hope no snow storms.

[irish]

Lucy, I hope that you can find some answers to this. It may end up being some neuropathy bum/with your past radiation. There are so many strange things out there. Also, when you mention the spinal injury it occurred to me that now that you are older and "shrinking" in height it might be that your spinal cord is causing some pressure. Just my rambling thoughts. Wish you well, my friend. Irish

P.S. I have been gone for a week or so as my monitor shorted out. Darned computer was shot anyway so I got a different one and still trying to get things lined up. Man, getting a new computer is rough at my age.

[eyeamdry]

iRISH, U of M has a very good reputation and I've been there a few times.  A couple for my diagnosis and then have been to the Kellogg Eye Clinic twice for my problems with Lasik eyes.  I know it's tough with a new computer at our age.  But I couldn't do without one.  If I had to choose one, tv or computer......well it's the computer.  Will post after my trip to Ann Arbor.

[audreygu]

I want to clarify, that I had had an earlier PFT by a local  with good reputation,  and had tested normal except for reactive airway disease, was given an inhaler,didn't help much. After multple pneumonias and bronchitis,had CT. When had the 2nd PFT by different MD is when she did the tests for the diaphram,Turns out first MD did not do those specific tests.So make sure that test was done. Doesn't help my SOB, but there is validation for my symptoms. Also the rest of my PFT continue to be normal, but MD said " lets try to get some of your energy back". the Advair has been a blessing, it brings down the inflammation which I did not know I had, and makes breathing so much easier. I can now do basic yoga, which reinforces deep breathing, and stretching and strengthening including the diaphragm

[eyeamdry]

@audreygu-----What exactly was the "diaphragm test" they did on you?  If I can name it, I can ask for it.  Thanks.

[audreygu]

I dont know the actual name of it, but it is part of the PFT, but they ask for a different pattern of breaths while on the mouthpiece.I have not asked for a copy of the test. Your pulmonologist will know
though. sorry cant be of more help.

[irish]

Lucy, I have had this test done also to check the strength of my diaphragm during the breathing tests. I don't know the name of the test either. It is not a big deal at all. Whatever they do they can tell the amount of strength in your diaphragm with your inhalation and exhalation. good luck. Irish

[Linda196]

I think you may be thinking of the "sitting vs supine vital capacity" to test diaphragm strength. There is a more involved test requiring the placement of a gastric catheter but it's not normally done as part of a PFT.

[valene2009]

good luck Lucy and happy travels..  i hope this trip brings you some answers..
Valene

[Bucky]

Lucy - just wanted to send my good wishes for a safe trip tomorrow and I hope you get some answers to why you are having breathing issues.

Looking forward to your update when you get back.

Bucky

[eyeamdry]

Thank you all for that extra info on the breathing capacity lying down etc. I would never know about this--and I doubt if any doc would mention it to me.  They try and stop when they can pretend they have done everything fpr you.

I will not expect to have this done tomorrow, but I got this appt in like 4 days, so I am happy that I likely will not have to wait months for additional testing if done.  I won't be able to sleep tonight, never can when we have to go someplace in the a.m.  Good weather to be--is a bonus. Lucy